Gina, Christina and I met on Thursday and just talked and talked and talked. Mostly at the same time.
Friday we took some time during the day to do some gluten-free carb-free shopping and pick up some people from the airport. We were a little late to the cake reception, but were pleased to see some cheese and veggies on the table too. Met a few people and tried to talk them into going to Christina's presentation.
The keynote speaker, Dr. Swick, was really good. The topic was Narcolepsy 101 and he had a good rundown of the history of research for N. He also talked about the FDA meeting and observed that PWN know more about narcolepsy than their doctors, which made me happy. At least one of them realizes it.
However- he did mention that the "next step in the plan" is to find out if Xyrem could be given to even younger children, down to age 7. That nearly gave me a stroke.
I went to a couple more sessions on Saturday morning. I really didn't find them helpful, wanted to scream most of the time, but I managed not to. It's amazing the glaring assumptions and errors non-narco people make about sleep and dreaming...
So I decided I probably should refrain from any more lectures.
That's when I found the dental hygienist's table.
Her husband is one of us and when they attended the conference last year she noticed how many people were discussing the insidious dry mouth caused by the drugs. She collected information and samples and was hoping to educate us that it is a real problem. I briefly explained my hypothesis about periodontal disease and gave her some of my information. I told her we need some dental professionals on our side and I really hope she will read my stuff and join our "team".
Kimberly lives in the area and came and gave me an awesome Zombie Survival Kit filled with gluten-free food and some local vegetation. I have only known her and Gina from the internet, so it was great to meet them. They are so healthy I would never have suspected they ever had narcolepsy.
Saturday evening we retreated to our suite and watched the South Park Gluten-Free Ebola episode. If you haven't seen it, you really should - It's hilarious. We had to pass around tissues because we were laughing so hard.
Christina's presentation was Sunday morning and it was great.
She covered her story of how she improved using a gluten free diet, and then introduced some of the research she is now doing in school with intestinal immunity and diabetes and how it may apply to narcolepsy.
She then presented results from the Survey they did over on the Facebook groups. It was really interesting, but I don't have the slides right now.
Then she covered the basics of all the food allergy diets we tend to adopt.
We had about 95 people attend, including a few we met at previous conferences (Charlie, Andrew, yay) who were already on board. It was great to see so many GF people raise their hands when we asked! It was a rousing success, and many people complimented and thanked her for the information.
I'd also like to make a shout-out to Wendy, Kristin, Atila, the lovely Canadians and the Irish guy with the great accent- I really hope you all read our research and it helps you out.
There was coffee available the entire time, a nice change from previous gatherings.
Had I attended more sessions, I'm sure I'd be more irritated and inclined to bitch about all the erroneous information that was disseminated. But that wasn't why I was there. I just wanted to see Christina be her bad genius self.
Overall, it was a positive experience for me. Despite the constant headache, and seeing so many people with obvious undiagnosed periodontal and metabolic problems, I managed not to cry. And the last part is what I have been living for. My dream come true.
However- I would like to share this observation with the crew over at Narcolepsy Network-
If narcolepsy is caused by respiratory infections as the research suggests...
Having a meeting in a high altitude city where it is difficult to breatheSeem like pretty bad ideas to me.
and
Having a nap room with a bunch of the sickest people sleeping in close quarters
and
Serving food buffet style with no sneeze guard...
